Presence and Content of Goals-of-Care Documentation for Patients With Adult Congenital Heart Disease at End-of-Life
Authors' conclusion
GOC documentation for patients with ACHD near end-of-life is suboptimal, yet when present contains information about patients' wishes. Future work should promote early GOC discussion and enhanced documentation to guide clinical care in this population.
Study context
- Population
- Decedent patients with moderate or complex adult congenital heart disease (ACHD) who received care from 2010 to 2021patients included
- Participants
- 114 patients
- Exposure
- Presence of goals of care (GOC) discussion documentation within the last 6 months of life, by patient characteristics
- Outcome
- At least one GOC discussion documented
- Follow-up
- Last 6 months of life
Main finding
As reported in the abstract
Patients with at least one GOC discussion documented
57
50%
Total notes
544
Observational data: associations, not effects.
Further findings
Association of presence of GOC discussion documentation with patient characteristics · last 6 months of life
| OR (95% CI) | P value | ||
|---|---|---|---|
| Risk of in-hospital death | 2.58 (1.19–5.61) | P = 0.017 | |
| Diagnosis of heart failure | 3.57 (1.42–8.97) | P = 0.007 | |
| Later era (2017-2021) | 3.20 (1.48–6.91) | P = 0.003 | |
| 0.10.31310Odds ratio (log scale) |
Palliative care consultation notes · last 6 months of life
- Patients with palliative care consultation notes
- 36 (32%)
Content of GOC documentation (qualitative)
- Patients were split between wishing to be comfortable at home vs prolonging life with aggressive treatment
Original publication
Presence and Content of Goals-of-Care Documentation for Patients With Adult Congenital Heart Disease at End-of-Life. JACC Adv. Published 13 March 2025. doi:10.
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